A Road Less Travelled – Living with Neuroendocrine Cancer

My Journey Begins – the ‘c’ word that nobody wants to hear

On the 20th June this year (2015), I got the results of my biopsy that was done on the 12th June, and it delivered a bombshell. In hindsight I should have cottoned on that something was not quite as it should be as I was seeing the oncologist, but for whatever reason that did not register. Maybe not such a bad thing though as it meant that I did not dwell on my appointment beforehand.

Neuroendocrine had been mentioned previously, I knew I had a tumour in the small intestine, and the symptoms associated with it (flushing, bloating, stomach cramps and diarrhoea), but the tests were inconclusive, and cancer had never been mentioned. The biopsy was to check what was going on and if possible remove it, unfortunately though it had metastasised into my liver, so the tumour could not be taken out. On a more positive note, none of the tumours are big and the condition is manageable, although it is not curable.

It is a rare cancer, currently approximately one in every 20,000, and as with most things the symptoms can be associated with many other things, and it is mostly found by accident. I have had symptoms on and off for many years, and now that I have had time to reflect and look back, many things are starting to fall into place.

So as the title says, I am at the start of my journey, a life changing journey, and trying to absorb as much information as I can and come to terms with the cards I have been dealt. I am generally a positive person, and aim to live my life the best way I can, there is a still a lot of sorting out to be done in my head, and adjustments to be made in my life, but it is early days. Luckily I have a very loving and supportive husband, family and friends, together with the multidisciplinary team at the hospital. As well as my first grandchild to look forward to:-)

There is also theNETs Patient Foundation, which was my first port of call for information and support, closely followed by the blogs of the lovely Ronny Allan and his Facebook page , who is also on this journey and has been very informative and supportive too, thank you.

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I can’t imagine where your head is at the moment.
I have been lucky that my episodes did not impact my life after I recovered. But it does make you realise that we should live each day and enjoy it.
Good luck.

Hi Cath, be positive and question everything, it is your body and life the Docs are treating, you need to learn as much as you can; so you can make the right chioces. I have had NETs for many years only diagnosed properly 5years ago. I have had lanriotide to relieve symptoms, it did work but not as much as I would have liked and other treatment; which did nothing. My secondary unoperable liver tumours kept on growing. This year I was given Luticium radiotherapy by infusion and to my delight my tumours have shrunk. I had given up thinking there would be any improvement. A reduction was not even hoped for, a slow down would have made me happy. The point of this is 5 years ago this treatment was not avaliable. Every day new treatments are being worked on. One of these may be your answer. When it gets bad, just keep thinking they are probably working on my treatment now, and I have to keep healthy and fit so it will work to the optimum when they give it to me. Keep reading positive sites like Ronnies and forget about the less positive ones. Wishing you love peace and happiness on your journey. Christine

Hi Christine, so much to learn, and it is a bit like information overload at the minute. But there are so many positive stories out there, and lots of advise and help. It is a great comfort knowing you are not alone. Thank you😀

I too have had good results with Luticium dotatate treatment. It used to be difficult to get this from the NHS, there were only a limited number of UK centres, but I think things are getting better now. Most patients would still probably need to travel though.

You are right. I was lucky I live 5miles away from the Freeman Hospital were they are trying to get as many patients as possible through this treatment on the NHS as it is having such good outcomes. I have talked to several other patients also with great results. I would advise anyone offered this to take it. The docs know if it is appropriate so people have to trust them. It is a ray of hope.

It feels oddly wrong to say, “Welcome, glad to meet you!” when we all have to meet under these circumstances, Kath. But, to know we are not alone is a good thing. Collectively, we can share our stories. We each have our own and tell it in our unique ways. So, looking forward to sharing with you. Welcome to this crazy world of knowing what our craziness is. 🙂

I’m sorry to hear of your diagnosis. Your blog is off to a great start and it looks great too. I’m glad to read that you are tenacious. A fighting attitude is really important. You may not always have a “positive attitude” but then you can fight by “hating the cancer”. It keeps you going in the low periods. I also fight for others, that keeps me moving forward too. 🙂 Fight, fight, fight!!!! 🙂 I added you to my links page and also will re-blog your first post on my blog at http://www.carcinoid-cancer.com.

I’m everyone has already told you to see a specialist but just in case they have not then please see a carcinoid / net cancer specialist. All of these hospitals have learned the buzz words of the carcinoid community like a “multidisciplinary approach” but it doesn’t always mean they do it. I have been lied to so, as they say, “trust but verify”. 🙂

I’m a few years down the road now. Against all odds, surgery to unblock the NET in my small intestine was successful. Sadly after two years I was not recovering any strength and it was suggested I’d acquired ME/Chronic Fatigue Syndrome as a result of surgical trauma. There was a vague idea that it might be low thyroid activity that was really to blame, but nobody would investigate/treat me. Finally it was decided to try a low dose of thyroxine, and the result has been miraculous – after two years of stagnation, I’m out and about again. NET treatments like Sandostatin are quite likely to cause this problem, according to the drug packaging, but there seems to be little awareness. I wonder how many others have the same problem?

Welcome to the blogging world, it’s been my outlet and I’m sure your going to become addictive too. I’m met some amazing people along my cancer journey. I will look forward to more blogs in the future. Hugs & stripes lol Zebrakat 😄

Unfortunately, as everyone has put, welcome aboard the crazy train. My story is that my husband was diagnosed in December, had his “big op” in January and is awaiting radio embolisation of a liver secondary. He was initially under Derby (his surgeon Gill was in the ITV programme Superhospital last week!) and has later been referred to Birmingham to the European Centre of Excellence. I found Ronny’s blog in those first few days, post diagnosis, and now I see more cases appearing. For a rare condition I have two colleagues with immediate relatives going through this also – one with a grandma with the same mid gut / liver combo as my husband, the other is a pancreatic / liver net combo. Best wishes for the future, I will add your blog URL to my feed reader and look out for further updates.

One thing about Kath Lewis is her aptitude for thorough research. I am confident she will travel this journey armed with the knowledge she needs to address this problem with her usual flair and tenacity. As they say knowledge is power therefore she will ensure she is well armed!

Hi Kath. Welcome to the NET world. Your story seems to be the story of most of us diagnosed with NET. Ronny’s is a great site to stay in tune with. Many will tell you not to believe what you read on the web always. While this is true, I have found Ronny’s blogs to be not only informative but also got a sense of support, of not being alone in fighting this battle, and most importantly, I learned that there is light at the en of the tunnel, there is life ahead to look forward to. As you gradually will find out that NET is something you will have to learn to live with, it is possible to do so. I was diagnosed early this year and already went through a lot of issues, thanks to this blog I have been able to ask the right questions and understand better what I am dealing with and what approach to take when talking to doctors. When I thought my days were counted, I learned I was wrong. Good luck to you and all the NET citizens in the world. Thank you Ronny for taking the time to share. My advice…. Use Your NET condition to live better, to fully live every day and love yourself more than ever. Care for every part of your body as the most precious thing. Always keep a positive attitude and, when you need it, cry it out. 😉

Hi Roossina, thank you for support, totally agree about Ronny, and it is good to know we are not alone. As for the, yes a good few of them have been shed already, and I am sure there will be more, they do their job:-) take care, and good luck with your journey too. I hope that as it evolves this blog will also help others as well as me.

Kath, i know this news comes as a bad surprise but, diagnosing this type of cancer is a great step forward to managing it and controlling side effects. I had carcinoid in my lung in 2003. It was removed and I thought all was well. In 2007, it had spread to my liver and spleen.

Although it’s been a consistent battle, I feel pretty good most days. I have tried many different meds and other treatments, all in coordination with my doctor. One thing i have learned is that you need to be your own advocate. Learn as much as you can, keep a positive outlook and stay involved with your life. This is a journey that can be filled with joy.

Hi Kath, Welcome aboard! Your story mirrors mine, but six months behind. Initial mention of the C-word in December 14 caused panic but things settled down once the NET diagnosis was made and I fell under the control of the fantastic team at Southampton University Hospital. Had the primary removed from my mid gut in May and am now looking at the options regarding the spread to my liver. Back at work now and looking forward. Hope all goes well for you. Best wishes, Richard